For six years, Elaina Burt has watched her cousin, Charlie Wilson, battle epilepsy caused by a gene mutation called SMC1A.
Charlie is nonverbal, stays in a chair all day long and is fed through a tube. She’s on medication for epilepsy, but if she didn’t have the medication, she would continuously have seizures all day, said Burt, a 17-year-old who lives in Riverchase.
“We’ve really had to grapple with the unfairness of that,” Burt said.
Burt, a junior at Briarwood Christian School who was named Miss Jefferson County’s Outstanding Teen last July, decided to take action. She started a nonprofit called Charlie’s Chance and now works to raise awareness about epilepsy, advocate for people suffering from it and raise money to enrich their lives.
She took it upon herself to organize a fundraising gala for Epilepsy Foundation Alabama this past November. The gala, Wings of Hope, drew about 200 people and raised more than $32,000.
Sara Franklin, a regional director for the Epilepsy Foundation who lives and works in Hoover, said she has been blown away by Burt and her contributions to the cause over the past two years.
Burt served as an ambassador for the Epilepsy Foundation, helping with events and encouraging family and friends to support seizure training so more people will know how to respond and help people when seizures occur.
She also helped call and email state legislators to gain support for the Seizure Safe Schools Act, which was passed by the Alabama Legislature and signed by Gov. Kay Ivey in the spring of 2021 and went into effect this school year. The act allows non-medical school personnel who are trained to administer nasal anti-seizure medication to do so in emergency situations when a school nurse is not on campus.
Burt has been a tremendous help, Franklin said. “She’s just had so many good ideas about how to raise epilepsy awareness and train people in seizure first aid,” Franklin said.
Also, Franklin was impressed that Burt took her support to the next level by coming up with the idea for a fundraising gala and organizing it herself, with some assistance from her mom. The event sold out and was a great success, Franklin said.
With limited staff, the Epilepsy Foundation Alabama organization didn’t have the bandwidth to do that themselves, Franklin said.
The Wings of Hope Gala was held at the Southern Museum of Flight, enabling Burt to combine her passion for epilepsy awareness with her passion for flying.
From a young age, she always thought flying was something she would like to try, she said. Her grandfather, Bob Wall, is a pilot and paid for Burt’s first flying lesson as a 16th birthday present.
“I just fell in love from there,” she said. “It’s really just snowballed into one of my favorite passions.”
Her friends thought she was crazy for wanting to fly a plane, but she liked the challenge of doing something in a male-dominated field, she said. She hopes to study aviation at Auburn University and become a commercial airline pilot for Delta, she said.
Burt flies with Over the Mountain Aviation at the Shelby County Airport. She already has completed her first solo flight, first cross-country solo flight and first night flight and is scheduled for her Federal Aviation Administration check ride on Feb. 4 to get her private pilot license, she said.
While Burt is Miss Jefferson County’s Outstanding Teen for 2023, she hasn’t been in a lot of those types of competitions. So far, she has been in only three. She won her very first preliminary and became Miss Leeds Area’s Outstanding Teen in June 2021 and went on to be named second runner-up in the Miss Alabama’s Outstanding Teen competition in March 2022. The Miss Jefferson County’s Outstanding Teen competition last year was her third competition, and her fourth will be the Miss Alabama’s Outstanding Teen competition this coming March.
Burt said she feels honored to represent Jefferson County in this year’s state competition and has been thrilled to have already received $25,000 in scholarships through these competitions.
She won the Jessica Baeder Community Service Award at the state competition last year for her work involving epilepsy awareness.
In addition to flying planes and working to battle epilepsy, Burt has several other hobbies. She has been a member of the track team and cheerleading squad at Briarwood since her freshman year and currently participates on both the varsity sideline football and basketball cheerleading squads and varsity competitive cheer squad.
She also has been dancing since age 2 and currently dances with the Birmingham Dance Theatre in Hoover. When she was younger, she did many types of dancing, including ballet, hip hop, jazz, tap and clogging, but she now focuses on ballet en pointe, which is the talent she performs in the scholarship competitions.
Burt is the daughter of Zane Burt and Eric and Kalika Gibbons.
Source: hooversun.com, Jon Anderson